“In his particular case, removing the colon was the only option left because he was on high doses of steroids to keep his ulcerative colitis in check, and you can’t be on such high doses for a long time without having complications from the steroids treatment,” says Dr. Michelassi, who is also the Lewis Atterbury Stimson Professor of Surgery at Weill Cornell Medicine. “In these cases, the surgery is necessary whether there is cancer or not.”
Although the J-pouch procedure can happen in anywhere from one to three surgeries, Will’s treatment required three to give him time to be weaned off his steroid medications.
Will’s surgeries included:
- A colectomy (removal of the entire colon) and temporary ileostomy, also known as a stoma, in which the last part of the small intestine (the ileum) is brought up to the skin of the abdominal wall and opened into an appliance. Waste passes through the stoma and into an ostomy bag applied to the outside of the body.
- The ileal pouch-anal anastomosis, or the surgery in which the J-pouch is created. In this stage, the rectum is removed and the last foot of the small intestine is used to create a J-shaped pouch and attached to the anus. While the J-pouch heals, patients continue to use an ostomy bag.
- The ileostomy reversal, in which the portion of the small intestine that was re-routed to the surface of the abdomen is reconnected, allowing for normal bowel elimination through the anus.
Each stage can require several months of healing in between, but Will insisted on scheduling his surgeries in the minimum amount of recovery time allowed, eight weeks apart, so he could be done in six months.
Dr. Michelassi says Will’s physical and mental determination is what enabled him to do this. “It makes a big difference to have a patient who is motivated,” he says. “In between surgical operations, patients need to be active and focused on regaining strength and muscle mass, and come off steroids. He’s not just resilient, he has grit and motivation, and he just wanted to get better and move on.”
Will recalls going for a run and doing planks two weeks after his first surgery with his ostomy bag in tow. “Being fit was helpful because it helped with my healing, but I was also making sure I stayed sane,” he says. “What brought me joy and what made me feel alive was going out and sweating and being active.”
His goal was to ring in the New Year cancer-free. “I was diagnosed in July 2014, and I didn’t want to go into 2015 dealing with this,” he says. “I had my last surgery on December 24th, and that was it.”
Recovery Through Community
That’s not to say there weren’t times when he felt himself succumbing to fear or anger. Then his friends and family would step in. “My dad would call me and say, ‘Did you shave today? Get up, go shave. Go outside,’” Will recalls. His then-boyfriend forced him to walk laps in the park, even in the rain, when he felt physically at his worst after the second surgery. And all his fitness friends and CrossFit colleagues constantly checked in with him and cheered him on.
“I made sure I surrounded myself with people who were supportive and would not allow me to wallow in my rage,” Will says. He includes his medical care team as part of that. “You have a care team, it’s not a care person. It’s not a care individual. There’s a team of humans that helps you, and I didn’t ever feel that anywhere else.”
During this time, he started reading up on colorectal cancer and realized that cases were rising among younger people, but awareness wasn’t. Working with a friend who worked in cause marketing, they started a #blankcancer social campaign. Will posed with his ostomy bag holding a “___ Cancer” sign to encourage people to post themselves filling in the blank with their own words. They also held a local event that combined fitness with cancer awareness. Dr. Scherl attended a yoga session that was part of the campaign.